We all have advice and opinions, but you must do what you feel is right.

[Guest guest]

As I look at posts I see we are a wealth of information.

I came here many times to search for options.

I remember when Ron was going through a rough patch and were so

concerned about his health that we bombarded him with more than he

needed at the time.

I also know that when I took Millie to the ER because I could not do

anything for her to aleve any emotional, psychological, or pathological

problems she was having, that it was my time to get outside medical

help. It was a blessing that they told us we could not take her home

and that we should choose between a nursing home and hospice, with the

end result being the same.

I was not the medical POA, or any POA for that matter, and at that

point, everything was taken out of my hands, as well it should have

been. I was only the d-i-l and although I had the most information and

history, it was the sons who would have to face the ultimate decisions.

That protected me in the final weeks.

We could have insisted on bringing her home but the result would have

been the same and I would have beaten myself up over everything like I

did my dad, as I was the one making all the decisions because I stayed

in the hospital with him day and night, even the three weeks in

intensive care. If there were any change or news, I felt obligated to

be there. My brothers went along with my calls and initiated having

the halo they put on my dad, for a missed broken neck from a year

prior, removed.

My mother had already been dead for 30 years, and I felt the spousal

role for his care.

I say all of this to let newbies know that all we can do is give you

the insights we have experienced with a disease that has not been fully

investigated or studied yet.

We are not with your LO when a feeding tube is suggested. We cannnot

know where you are precisely in your journey. You may not realize

where you were in the journey until your coaster stops.

We did have a peg tube put in when it seemed that my father was going

to get better and would need is strength for rehab. If we had known

the day he had his stroke that then end was 5 weeks away, we would have

let him go without the tube. As it was, the tube was removed, he went

to the rehab center, and then slipped into a coma on Father's Day with

no warning.

Do whatever you have to do to come away from the platform knowing you

did everything you knew to do to make the LO comfortable, and give them

the best shot at living with LBD on the best terms medically availble

to them.

Your LO has gone to visit a foreign county and cannot learn the

language. You have been drafted to collect the data and learn the

language.

So much of this is on a " wing and a prayer " , and some of the time you

will feel you have neither.

I did google " LBD and dying " and found that the nerves die in the LBD

brain. That kinda made better sense than how I had thought about it

before. I imagine other nerve paths can pinch hit for a while, but

then the compensation by volunteers finally breaks down for good.

Who knows, maybe the " kids " are trying to fix things, and just don't

have the skills to handle the job. Maybe the " kids " are playing with

the wires, trying to reconnect them as best they can. I have a visual

in my mind's eye of a frustrated three or four year old holding all

sorts of wires of different colors, and not knowing how to match them

up.

the doctors aren't much help in many cases because the wires befuddle

their training, as well.

Those are my Sunday morning thoughts, 10 days after losing Millie.

Carol